"Alive"~Adelitas Way

So my when I opened my Facebook this morning, my memories from previous years popped up.  One of those memories was one that was hard for me to read but at the same time it made me smile.  It showed me where I've accomplished in the last 5 years, and I continue to keep moving forward.  I have any many trials and tribulations during this time.  Some failures, but many more successes.   So I decided to re-answer the questionnaire.  My new answers are in purple.  Some answers may stay the same, but many have changed.  The first three questions are the same answers.
1. The illness I live with is:  Mal de Debarquement Syndrome (MdDS)
2. I was diagnosed with it in the year:  2012
3. But I had symptoms since: 2012
4. The biggest adjustment I’ve had to make is: I'm no longer completely independent on myself  ...Not being too hard on myself when I don't accomplish something the first time around.
5. Most people assume:  Since I look & sound okay, that I'm okay same
6. The hardest part about mornings are:  Realizing that nothing has changed and I'm still suffering.  On my good days, the hardest part is getting everyone out the door on time.  On my bad days, not getting sad that I'm not getting up like I hoped. 
7. My favorite medical TV show is:  Medical Mystery, The Doctors, and Dr. Oz...Grey's Anatomy (lol...seriously, I don't watch the others anymore)
8. A gadget I couldn’t live without is:  My cell phone.  Its my life link if something were to happen while I'm home alone with my daughter.  Again my phone, especially when I'm home alone, but along with this is my tablet so that I have something to keep me busy when I'm stuck in bed or trying to distract myself.
9. The hardest part about nights are:  Trying to fall asleep.  I have insomnia some nights from the motion.  I'm not having too many more bad nights.  I have motion here and there but usually it quiets down when I lay down.  Very rarely do I deal with insomnia anymore.
10. Each day I take _0-4 (9) pills & vitamins. (No comments, please)  All new meds that I've recently started taking for other issues, such as my more recent diagnosis for bi-polar and anxiety. 
11. Regarding alternative treatments I: I continue to look for new treatments.  I've tried a few different things, but they have made no change or made me feel worse.  I actually started all over again with trying new treatments this year, but mostly they made me feel worse. 
12. If I had to choose between an invisible illness or visible I would choose: visible.  same
13. Regarding working and career:  non-existent.  I haven't been able to work since May.  I continue to train myself to be able to get back to work.  I'm officially working full-time and I have been for the last couple of years!  I still miss some days from work due to major flare-ups but I still try to do what I can to work
14. People would be surprised to know:  I have anxiety standing around people, even those I know, even my own family.  This is hard because I have become so much more open about what I'm thinking or feeling.  I don't hide very much anymore. 
15. The hardest thing to accept about my new reality has been: I can't do everything that I want to do.  Fully accepting who I am now. 
16. Something I never thought I could do with my illness that I did was: Travel again ....Drive, Work, Dance, Laugh even at my own expense.
17. The commercials about my illness:  I haven't seen any.  same
18. Something I really miss doing since I was diagnosed is:  Driving ...I'm driving now!  I'd have to say roller coasters.  I've ridden them a little bit, but I used to be able to go from one to another and then repeat, but I'm lucky if I can do one. 
19. It was really hard to have to give up:  My job  (have a job now!)  but I think that was the hardest part of this since my diagnosis.  Just losing different parts of what I thought made me who I was. 
20. A new hobby I have taken up since my diagnosis is:  Writing this blog :-) ...well, i've slacked on the blog, but I read  A LOT, I do a handwritten journal, I paint
21. If I could have one day of feeling normal again I would: DRIVE!  go boarding in the ocean!
22. My illness has taught me:  Take each day one minute at time.  It could be worse, It could be better, but this is what it is today.
23. Want to know a secret? One thing people say that gets under my skin is:  Are you sure you can't work?  I think the things that have been the worst is when people think it is all in your head or you use it as an excuse.  That you're not really dealing with this invisible chaos.
24. But I love it when people:  Have an open mind and ask questions without judgement. same
25. My favorite motto, scripture, quote that gets me through tough times is:  I don't have a quote or motto, but music usually puts me in a better mood.  It relaxes me.  "Life isn't about waiting for the storm to pass.  It's about learning how to dance in the rain."
26. When someone is diagnosed I’d like to tell them:  You are not alone and its not all in your head.  same, but to add, how can I help you cope?
27. Something that has surprised me about living with an illness is: Changing and adjusting how I do things around my house and with my family.  same, but to add, realizing how much strength and courage I have to keep pushing myself through. 
28. The nicest thing someone did for me when I wasn’t feeling well was: My mom and little brother drove across town, bought dinner and brought it to my kids since I couldn't cook. This is hard to answer now because it has been 5 years of people doing amazing things for me from driving me to doc appointments, therapies, buying things for me, running errands for me, helping with my kids when I couldn't, listening, making me laugh and the list goes on and on...
29. I’m involved with Invisible Illness Week because:  I actually just found out about it, but I promote awareness as much as I can to this syndrome.
30. The fact that you read this list makes me feel:  Like people are becoming more understanding in what I am dealing with on a day to day basis.

Doing this list made me think a lot about my MdDS, and the thing with filling this out tells you how this affects me.  MdDS affects people different ways.  It is diagnosed each time by doing different studies and crossing off other diagnoses first.  I have learned that people have different symptoms that range on a scale from 0-9.  Some people go into a "forever remission," some have a short period of remission, and unfortunately there are those who never do.  Certain actions can exacerbate symptoms for some people while for others it makes their symptoms go away.  That is the reality of the syndrome.  So we need to continue to talk with one another, we need to be open and honest with our doctors and push our doctors to research this syndrome.  We need to stand for our own healthcare and not take no for an answer.  Invisible illnesses can be very frustrating, but we need to stay positive.  We need to support one another and continue to reach out to those who are willing to help us.  My goal is to get our information out to the public.  It will take time, but we will be recognized and information will get out to those who continue to suffer without a diagnosis.
I continue to promote exactly what I deal with on a daily basis.  I don't hide my struggles.  I ask for help, even if I really don't want to.  I'm not ashamed of it.  This is me and its part of life but it is not my entire life.  I will be honest and say that I have had some really dark days, days of just ready to quit, but I didn't.  My life isn't perfect, its far from it, but its my life and I'm going to live it to the best of my ability.  

"Hurricane 2.0"~Thirty Seconds to Mars (Remix w/ Kanye West)

So I have MdDS.  We know this.  I've officially had this syndrome for four years.  It's something that I have had to learn how to cope.  I have had to relearn how to do basic tasks.  I've had to figure out shortcuts for somethings and I've had to learn how to take the long route with other tasks.  But that is what I've had to do with dealing with this syndrome.

But what about my family?  What has my husband had to figure out?  What about my kids?  What do they give up?  What don't they understand or can't figure out?  How have they had to cope?  What has changed for them? 

I am one of the lucky few who has an amazing support group at home with my friends and family.  They researched along with me.  They have called me on my bad days.   Bought me small gifts to keep me busy when I was going crazy being stuck at home.  My husband took me to most of my appointments when we were struggling with what was wrong.  Late nights or early mornings in the ER.  He's been there to literally pick me up off the floor.  My friends talk to me through messenger or video chats when I'm feeling lonely.  They bring me up when I'm feeling down.  My kids have recognized when I'm struggling with standing still or walking on tile floors and are quick to grab my hand to keep me stable.  They like to cuddle with me when I'm stuck in bed and understand when mommy can't watch a movie with them, but I'll listen to it.  But again I'm one of the lucky few.

One of the biggest issues that I see come up in our support groups is the lack of support outside of those groups.  It makes me sad, but it makes me wonder why.  Why isn't there an understanding when one of your loved ones is struggling.  There is a need here for educating those around us.  Unfortunately there isn't a support group for those who live with someone with MdDS.  Maybe this is something that needs to happen.  So many people have messaged me or talked via phone with me about how their family "just doesn't get it" or "they want their mom/dad back to normal" or "they don't believe that I'm struggling".  That one hurts most I think.  

We are already dealing with medical professionals telling us "it's all in your head."  The last place we need to hear it is at home.  Home is the place where we should be able to find that undying support and love, but unfortunately that doesn't happen.  There is ridicule, hurtful comments, fighting and frustration in a place where there is already so much anxiety and stress.  

So the question comes out....How do we get them to understand especially when we don't understand this all ourselves?  For some, you have said vows that include "in sickness & in health" and this is sickness.  This is really bad sickness, because there are no right answers.  Can we truly expect someone to understand something that there are no definite answers to?  So then you work on what we do know.  We know we rock.  We know we deal with the inner ear issues.  We deal with the nausea.  We deal with anxiety and depression.  

The best start is communication.  Not just from us MdDSers but those around us.  Listen to what they have to say.  Stop fighting every word that is said, but listen carefully.  What is frustrating them?  What is hurting them?  What are they scared of?  Many of us have seen counselors in the past and this may be a time when someone else needs to be brought in to figure out a good solution for all parties involved.  

For some of us, this is a syndrome that we will have for a long time.  There is no getting around it.  No magic pill that will take it all away.  No magic treatment that will have it disappear forever.  Not yet at least.  So in the meantime, we need to find solutions to have those around us have a better understanding.  To give the support to them as well.  To help them cope.  

The other side of it is us pushing through what I call "My pity party, population 1."  Being positive within myself helps with my family willing to learn and understand what I'm dealing with.  I'm not saying to pretend or "fake" feeling good.  I'm talking about knowing what you can and cannot change within yourself to better your life.  Trying to have a positive outlook on life that things will get better helps.  And I have communicated that with my husband, my kids, my family & friends.  On those lower symptoms days that I have, I push myself to do as much as I can, so that on my really bad symptoms days I don't feel so bad. 

And those pesky bad days?  Even those days I set small goals.  Even if it is moving clothes from a washer to a dryer, picking up one room in the house, cooking a small meal.  And I get excited about accomplishing those small goals as much as I celebrate the big goals.  Every step counts.  Again, communicating those goals to those around me, so when I feel like giving up, those people push me not to. 

This syndrome can destroy.  It can destroy those MdDSers.  It can destroy families.  It can destroy relationships.  We need to figure out a way to not let that happen.  We need to figure out a way to get a better understanding of our disorder so those around us can understand and help.  Even if we get a random high-five for being able to go from sitting to standing without falling. Even if it recognizing we are trouble due to a type of lighting in a room and removing us from that area.   Even if it is a thank you for cooking dinner, even if that dinner came from the freezer.  Or even if it that person not pointing out you being stuck in bed all day because the symptoms are so extreme.  Support comes in many different ways.  And us MdDSers need it. 

"Stories"~Trapt

Every day a new story begins for a fellow MdDSer.  Someone who was recently diagnosed or someone who finally has the courage to accept their diagnosis and share it with others.  Someone speaks up with the trials of getting a final diagnosis.  Someone who has started a new treatment in hopes that it will work for them.  

Every day we hear stories of how our journeys begin with MdDS.  Was is a cruise, a flight, a car ride?  Or was is something completely different like a surgery, a dental procedure, an elevator ride or a trip on a roller coaster?  Was it instantaneous or did it slowly get worse over time?  The journey for everyone is different, but we all end up on the same boat.

Every day we hear stories of how we are coping.  We hear about different treatments doctors are trying to do to figure out what will work.  I always say, I have MdDS and there is no cure, YET.  It takes doctors finally believing in this disorder and willing to try different meds or techniques to get patients through it.  Some treatments work for some patients.  Some don't.  But every day we open up about what we are trying to do to make our lives better.  You never know what might work for someone else.

Every day we hear stories of loved ones.  Those that are supportive and those that are not.  I'm one of the lucky few who has the support of those around her to be able to overcome some of the worse symptoms.  Unfortunately, there is a large percentage who are not as lucky.  Those stories are the hardest to hear for me.  No one knows what living with disorder is like, but then again like my husband tells me, "You don't know what it is like to live with someone who has this disorder."  He doesn't say this to put down my disorder, but for me to understand the stress of a caregiver, which is what he is.  Since telling me this, I have tried harder to explain what I'm feeling and he has explained to me how it affects him.  I give him compassion just as much as I expect the same compassion given to me.  (Idea for new post after this one....the perspective of the people around us....but back to this post).

Every day we have new supporters on our group show up to tell their stories of their loved ones and how they want to learn.  They share their stories and we listen and give advise on how to help their loved ones.  Their stories are just as important as ours because they are trying to better handle their own situations with this confusing disorder.

And every day we hear stories of hope.  Hope for a better tomorrow.  Stories of strength and courage.  Stories of faith and love that we will get through this.  Stories that we are no longer alone in a world that can feel very lonely.  Stories of a possible cure one day.  I always say, "I have MdDS.  There is no cure, YET!"  I have the hope that one day I can change that statement to "I had MdDS."  

Our stories are important.  Our stories get our words out into the world.  Our stories are getting doctors to listen to us and try to help us.  Our stories help each other with coping, with showing support for one another all over the world.  Our stories need to be told so that the world can hear our cries for help but also our cries of strength.  Our stories are important because without our stories we won't find a cure, we won't find out how many people are truly affected by this disorder, and the world will never know how bad this disorder can really be for each of us.  

Our stories are important because there are those with MdDS who cannot speak of their disorder for fear of losing their jobs, their families, everything.  Our stories are important because right now, in this moment, are stories are pushing us to do more, be more.  

So every day I look for the new stories, and I write more to my story.  I write for those who can't.  I write to no only help myself cope, but also I hope that my words help others.

Every story is different, with one similarity, MdDS.  

 

"Can't Stop The Feeling"~Justin Timberlake

Four years ago.  I was diagnosed with MdDS.  I was fighting a losing battle with my own body.  Not quite understanding what was happening to me and realizing that things were going to change for me.  I was researching and finding out as much information as I could about my diagnosis and what I could do to try to get better.  

Three years ago.  I wrote a blog about my first time driving in over a year.  I hadn't been able to actually drive myself.  I was good riding, but not driving.  I didn't drive far, but I did drive and since then you can't keep the car keys out of my hand.

Two years ago. I started working more hours and set myself a goal to start working full time at my job.  This was something that I couldn't imagine doing again.  With the loving support of my work family, and very understanding bosses, I was able to push and work through physical & mental obstacles to be able to accomplish that goal later that summer.

A year ago. I had a period of remission earlier in the year, but it only lasted a few months.  I was discouraged, upset and frustrated.  But I also realized that this is how it is going to be and it is something that I have to accept and deal with.  I still have issues with being able to feel this way, but I am getting better.  

Today.  Today I feel great.  After a few weeks of feeling miserable and having a hard time getting around and being able to live my life, the last two days have been really good.  Symptoms have been really low.  I have my energy back.  I have my smile and laugh back.  Last night I cooked dinner for the first time in a really long time.  Tonight I did tons of laundry and getting stuff organized in the house.  I danced around to music and just felt amazing.  Even with some stressful moments at work, I handled them really well.  

So what does all this mean?  Welp, there are good days and bad, just like anyone else.  Mine just happens to come with the motion of the ocean.  I'm allowed the bad emotional days, but I really love my happy girl days.  Those days were I can goof off and have my sense of humor and just be fun, just be me.  

So today, I laughed, joked around, goofed with my kids, talked with friends, and danced in my room.  Today I got to be happy me.  BEST. FEELING. EVER!

So today, for my MdDS friends who can't get up and dance, I'm blaring some Justin Timberlake and dancing for you.  Cause none of us "Can't stop the feeling" of the rocking, but the beat of the music is too good not to move to it, even if you're just swaying to it. 

"She Used To Be Mine"~Sara Bareilles (lyric video included)

This song has touched so deep in me.  It goes back to my last post about feeling the loss of myself and learning the new me.  Being okay with the way that I am now and accepting the new.  

I take it day by day, working through different emotions.  I put on a brave face, and laugh a lot of it off because if I don't I'll break down, and I don't want to do that any longer.  

I've opened up a lot more about it.  What it does to me, how it affects everyday life.  What I've accomplished in the last four years but also what I struggle with every moment.  

I've come to the realization that most treatments won't work for me, and it is not that I've given up on finding something that will work, but I'm not willing to put myself at risk to make things better.  I'm not willing to risk my sanity.  I can't do that to myself or my family.  I've lost so much already, I can't lose my strength that I've gained over the last few years and even the last few months.  

Lately I've been working on me and my self confidence, because I've lost a lot of it.  I've learned how to play a lot of it off and pretend that I'm someone I truly don't feel on the inside.  But I'm getting there.  I'm doing things that make me feel whole.  I'm doing things that make me feel good about myself.  I'm starting to look into the mirror and find who I feel I am meant to be.  I'm seeing that fire in my eyes that I thought lost.  I'm seeing the strength even on my weak days.  I'm finding the good and looking past the bad.  

I'm opening up more to those around me with the hope that I find acceptance, but even if I don't I'm okay with that.  I'm showing you who I am.  I'm giving my all and not expecting understanding anymore.  I know that some won't get it but this is me.  I get frustrated more than I used to, I get upset, I break down.  I'm not always happy go lucky and everything is great.  But those happy moments you see, they are genuine.  When I do smile and laugh, it is a true laugh and meaningful smile.  

And those days that I don't see the good, when I've lost sight of myself, I have amazing friends and family who show me what they see.  I go back to that mirror and find what they see.  I remind myself that I am somebody.  That I'm understood.  I'm strong.  I'm capable.  I'm compassionate.  I'm caring.  I'm beautiful inside and out.  and I'm loved.  I'm so loved.  By many.  And hearing that makes the hurt and sadness and the frustration and the anger slowly go away.  

"Crystals"-Of Monsters and Men

The mental stress of MdDS is ridiculous.  And until these last few weeks did I really start to understand why.  

Since being diagnosed with MdDS, I've now also been diagnosed with panic attacks, anxiety and depression.  For someone who is as energetic and outgoing as I am, to struggle with these type of mental illnesses is extremely difficult.  You're already dealing with an "invisible disorder" and now lets just throw on more to the pile of crap that no one can see, believe or understand.  

I was diagnosed with depression when I was a teenager (completely separate from what I have now).  It was an extremely scary time for me.  I had such a hard time with getting my thoughts out of my head.  I used to write then whether it on paper, in books, or even on my bedroom walls, but I got it out anyway that I could.  I hurt those closest to me, I was extremely emotional, and felt completely out of control of myself.  I lost me.  I lost who I was.  But once situations changed, I got better.  Much better.

But this time I can't change my situation.  I can't fix it.  I can't make it any better than what it is.  But the anxiety and depression has been at an all time high these last few months.  The panic attacks are intense.  I go a few weeks of feeling okay, but then I get the bad days.  The over-emotional days that I feel I'm out of control of everything, that I'm losing everything, I'm losing myself again.  And I'm not sleeping because of it.  Too much going through my head at once to try to get it to stop.  

I started seeing a counselor for it.  I'm trying to get a grasp on all of it, and figure ways to approach it all in a better way.  Like I've said before, I can't take a lot of the meds they want to you to help with the symptoms to regulate it all, so I have to work with my own brain to try to train it think of things in a different way, see things in a different light.  

In my last session, I talked about everything that has changed in the last 4 years.  She pointed out that I'm finally grieving.  Grieving for the loss of who I was.  Something that I should have done a long time ago.  Because I did lose her.  Even if I miraculously go back to no more rocking, no more movement, etc.  I will never been the same girl I was back then.  I will never be that Sara again.  I can't be.  I have to let her go and accept that this is the new me.  This is who I am 100%.  Even if I go to a time with no more MdDS, I'll always be that girl who had MdDS, who struggled and fought and relearned how to live life all over again.  It's hard to lose someone close to you, it's even harder when it's yourself.  How do you cope with that sort of loss?  How do you accept that sort of loss? and How do you move forward?  You grieve, just like with anyone else you lose.  

So I guess that's what I'm in the process of doing.  I'm learning to cope with the emotional side of things.  I figure though, if I learned how to walk, drive, cook, climb stairs and exercise all over again, then I can learn to deal with the chaos in my head.  Learning not to hid it all, but to be okay to get mad, upset, frustrated, but also be happy and accept the good as well.  

And just like the MdDS symptoms of understanding there will be good and bad days, it'll be the same with the panic attacks, anxiety & depression.  I will have my good days, my great days, and then there will be the not so wonderful days. And it's okay for me to feel this way.   

"The Light"~Disturbed

The confusing part about MdDS is that it doesn't make any sense.  None.  Its like BAM! here's this syndrome you have that doesn't quite match other sufferers, but somehow you are all linked and now you need to figure out how to cope and live with it with no reasons as to why it happens or how to fix it and make it go away permanently.  The symptoms change for each person who suffers, but a predominantly someone suffering from perpetual rocking/swaying motion.  There are certain remedies that help certain sufferers such as medications, chiropractic manipulations, vestibular therapies, etc.  But what works for one, doesn't work for all.Currently there is no definitely diagnostic study to provide a definite diagnosis of MdDS.  There is no cure for MdDS. 

It's a battle.  A huge battle.  A struggle.

One day you are feeling your "new normal", as I like to call it, because well, yes, this is my new normal....it's definitely not my old normal life.  The next day you are laid out and can't do much of anything.  It can even happen within a day's time, from morning to afternoon.  

I've talked before about the scale that symptoms are rated.  This scale helps MdDSers explain exactly how they are feeling on a day-to-day basis.  It's a way for us to better understand where someone is standing, or in our case rocking/swaying.  My scale fluctuates a lot more lately.  I've noticed stress makes the symptoms worse, weather pressure symptoms pretty much put me out for the day.  Sitting, or laying, and listening to music helps my symptoms calm down, as well as keep up with a good diet and staying hydrated.  

I've recently gotten back into exercising again and I have found there are a lot of movements that I am just unable to do anymore.  Even on the good days, the motions cause too much stimulation around me to make it safe for me to complete the exercises, so I've learned to modify them to work for me.  Burpees are a definite no for me but I can break down the movements with small breaks in between each part and I can do it.  I stay away from face-paced movements and stick with the slower motions and this helps.  The exercising has been helping with my core strength and balance.  But as much as I love exercising, there are days that its just impossible for me to do any of it.  However, I'm learning what new things I'm capable of doing and what are some of my new limitations. 

Every day is a learning experiment.  It's learning what your limitations are for the day and being okay with it.  It is knowing when to make a judgment call for not only yourself but those around you and decide if you should stay home or go out in public. 

Unfortunately with there being very little information about MdDS out there in the general population, for most of us the choices are taken from us.  Others don't understand what you are dealing with, how it feels and how to deal with someone with this syndrome.  I can't just pretend like it doesn't exist.  I can't make it temporarily go away so I can go into work for a couple of hours or drive to the store or walk around a mall.  I can't just "walk normal" or stand still while talking to you.  Sometimes it is just not a possibility.  

Then again, sometimes I will be doing well that day and I am standing straight.  I'm dancing and jumping around the room.  I'm running.  I'm bending over and standing back up with ease.    No I'm not faking my symptoms or exaggerating what is happening with me.  I'm just having a better day.  I really really like those days.

So yea, MdDS is confusing.  Mind-boggling actually.  But MdDS is just a part of what I deal with every day.  And I'm still coping and moving forward, even if its a crooking motion forward.

"Eyes Wide Open"~Gotye

I'll first start by saying my vision is horrible.  Actually horrible isn't a strong enough adjective to describe it.  I've had to wear glasses since I was 6 years old, moved to contacts at the age of 14 for my near-sightedness.  At the age of 11 or 12 my optometrist told me that around the age of 30 or so I would need bifocal lenses.  He knew this my the degeneration of my eyes and knew that at some point I would be forced to need the additional help.  At the age of 25 my eyes were so bad that I wasn't even a candidate for corrective surgery as I would still have to wear contacts/glasses afterward because they wouldn't be able to completely correct the problem.  That all being said, I absolutely HATE wearing my glasses.  I actually avoid it at all costs, which isn't good for my eyes, but, seriously, HATE wearing the stupid things.  Besides when I wear my glasses it throws my MdDS symptoms into high gear.  I actually see much better with my contacts. 

Ok, so now the point of my post for today.  This morning I had my annual eye check.  Now mind you I have seen the same lady now for the last two years and never had any problems.  In fact, last year she found the perfect brand of contacts for me that made my eyes feel so much better.  However, she wasn't in today and there was a fill-in doc.  We shall call her Dr. Witch.  Now, I haven't had any problems with focusing near or far away this last year.   My eyes actually have not been bothering me nearly as much as they have in the past. 

Well, Dr. Witch starts her exam and before she has me do anything she checks my eyes and says that it looks like my eyes have been strained.  I explain to her that I have been doing more reading on computers recently, haven't been wearing my glasses like I should and I know this doesn't help the strain.  She starts having me do the typical read this line, what about that line, which is better one or two, etc.  So far I'm good.  Then she says okay close your eyes, she flips some switch on the the machine and then tells me to open my eyes.  When I do there are two letters, but set as double vision and the letters are extremely blurry.  I immediately close my eyes and beg her to turn it off.  She explains that she needs to complete this exam to figure out what I need for my prescription.  I try again to open my eyes.  I shut them.  They are moving, shifting, I immediately start rocking.  I've never had this happen before and I beg her again to please take it down and I actually start having an anxiety attack.  She tells me that she thinks I may need bifocals to help with my vision as I'm having issues focusing from one object to another and to complete the exam she needs to do this part.  

I start to explain to her that I have the MdDS issue and that its causing my symptoms to escalate and if she looks in my chart she will see that I have this issue.  I open my eyes again but she hasn't taken it down yet, so I end up pushing the machine away.  At this point I'm sitting in the chair unable to move cause of the rocking and I feel trapped.  I have tears running down my face because I don't know what to do.  She then tells me that I'm in denial for needing the bifocals and that if I would use them it would help with the visual aspect of my MdDS.  I asked her if she's ever heard of the syndrome.  Does she understand what it entails?  Has she had patients who have had this and changing their glasses helped them?  She tells me that she's never heard of it, but if my vision is messing up the way that I'm stating, then changing my glasses will fix it.  I immediately start laughing.  I actually got mad at a doctor, which never happens, and took a deep breath to stop the attack.  I then tell her "Do not take guesses on my care.  If you have never heard of a syndrome how can you assume that your treatment is going to miraculously cure my problem?  Lady, no offense but I've been fighting this disorder for 3 1/2 years.  I've tried different treatments, and worked with different specialists.  I'm not in denial about the bifocal issue as I've known this was part of my future with needing glasses.  If the bifocals will help with the strain of my eyes, I will be glad to try it.  However, since Mr. Ben Franklin invented the bifocals, I'm sure there is another test you can perform that doesn't involve double vision blurry letters.  Thanks."  

Unfortunately, I still needed to have my eyes dilated and checked.  I just tell her to do what she needs to do so I can leave.  Before I go, she explains that they can't trial the bifocal contacts because my eyes are dilated (with dilated eyes, you can't see things close up due to too much light entering the eye).  So now I have to go back in a few weeks to try them to see how they work.  However, it has now been notated that I won't see her again.  

Its frustrating to have the syndrome.  Its worse when doctors tell you you are crazy.  I don't ask docs anymore for help in regards to it.  I'll be glad to explain what it is, but I have a physician who helps me and from there I don't need any other doctor to tell me I'm crazy and that what I'm feeling is not really happening.  So sorry mom, I showed my tail in a doc's office and got ugly.  Highly doubt it was the first time, probably won't be the last.  Hopefully it was though.  

"Shatter Me"~Lindsey Stirling (feat. Lzzy Hale)

In a world of rocking, you feel like you never get a break.  Your brain just never shuts down.  Its like someone or something is screaming loud and constant.  You struggle with so many "easy" daily tasks.  Its amazing how we MdDSers don't lose our sanity.  And with all of the thoughts running through your brain, you have this stupid brain fog that rolls in and it either slows your thought process down or takes the thoughts away completely and you forget what you were doing, saying, figuring out. 

Sometimes I have the little thoughts running loud and the important ones get hidden under the noise.  I forget upcoming events, or telling someone an important topic.  I tend to interrupt conversations, not that I'm trying to be rude, but if I don't get the idea out it will get lost.  I feel like an idiot when I'm in the middle of the conversation, mid sentence and the idea is gone.  Just completely disappears. So the other person is just sitting there like "........."  Happens all the time!  Its so frustrating! 

Then for me, I deal with my ears "popping."  There are days that my ears have so much pressure and I feel like when people talk to me, they are in a tunnel sometimes.  Then my ears will "pop" and it almost sound like someone has snapped their fingers right next to my ear drum.  This popping can cause some pain which is not explained.  Because of the pressure sometimes I'll talk really loud and not realize it.  I'm already a naturally loud person but I definitely get louder and don't realize it until I have someone say to quiet down.  If the pressure is too much I tend to be really quiet because the added noise makes my symptoms feel worse.  

For me, I can deal with one or two symptoms at a time.  I've learned to cope and make adjustments, but you throw numerous symptoms at me at once or they jump up on the scale and its like I just want to shut down.  I literally get so tired of fighting and pushing through that the only thing I can do is just crash for the rest of the day.

When I lay down though its like the brain picks up speed and wants you to contemplate everything at once.  Its like "Oh we don't have to function the rest of the body right now, so....lets think of the world's problems and how we are to fix all of them."  You over think everything.  Every decision that you make, every feeling that you feel, it becomes overwhelming.  

The point of all of this?  I really don't know...haha...no seriously...I have no clue what the point of explaining all of this is because I'm still working on the coping of this particular MdDS problem.  I do tend to write more things down.  I utilize texting and messaging to send info to friends and family so I can say what I need to right then and there.  My phone has become my buddy with its amazing calendar that is backed up to my email so I can't forget appointments, birthdays, etc. 

I guess I'll just need to sit here and relax until the fog dissipates and I'll one day get all my thoughts across as I intended originally.  One day.....maybe....or maybe I will just eventually go insane and my new best friend will be a padded room....only time will tell.

"Night Train"~Jason Aldean

I got stuck tonight.  I was trying to find a new song so I could write again tonight.  But I couldn't find anything that really hit me for a song.  So then I went through every blog I have written and made a playlist using all the songs.  So I actually got to hear a lot of the music that I haven't listened to in a while and it helped.  

I got stuck again because then I didn't know what I wanted to write.  I wanted to write about my faith and how its pulled me through some of the harder times.  Then I thought I would write about my support but I've definitely focused on that through many posts.  So then I went through and read what I've already done.

It all of sudden hit me as a song started playing....Do you ever hear a song or see something and you flashback to a time in your life that you didn't remember a second ago, but that moment, that lyric, that picture took you right back to that spot in time.  I get it sometimes when I pass a certain road, see a picture of something or someone, but it really hits with music.  

Like I've said before, I have this crazy connection with music.  Its like my memory is attached to certain songs.  I can flashback to middle school dances, dance routines from recitals growing up, high school parties and car rides with friends, to parties in college and trips with my sorority sisters.  I've even remembered tests that I've studied for because of using the music to remember details.   I remember taking drives to see family or friends, hanging out with family or friends.  Dancing with my kiddos or seeing them dance on their own.  

Some of the songs I heard took me back to those posts that I've had before.  Those really hard days that I didn't want to write, but I did because I made myself a promise to write the great, the good, the bad, and the really ugly.  It was just as important to write about the good as it was the bad because I can look back and see all that I've accomplished.  

Its been 3 1/2 years of insanity and it continues everyday.  I have gone through short periods of no symptoms, but its been awhile since I went more than a few days without symptoms.  I usually have at least one or two of them everyday.  I can handle one or two at a time, its when all the symptoms starting hitting me at once.  But I've survived worse.  I've overcome a lot of obstacles and I will continue to do so.  As long as I have my earbuddies and an infinite playlist of songs, I'll be set to face whatever MdDS wants to bring me. 

"Oceans (Where Feet May Fail)"~Hillsong United

A lot has happened the last few months that has been extremely challenging for me.  Its been a pretty hard struggle.  One that I haven't had to deal with in a very long time, but its something that has been progressing over the last few years and I finally broke.  I promised in the beginning that I would be honest here, talking about the good, the bad & the ugly of my life with MdDS...so (deep breathe) here we go....

I've talked about the crazy physical symptoms that come with MdDS.  You have the rocking, swaying, motion side of things.  You have the visual & inner ear struggles that vary on each patient.  You have the headaches, the migraines, the brain fog.  All the joys of MdDS and what we must face every day.  I've talk about the nausea, motion sickness, and also the anxious feelings you get when surrounded by a large crowd.  

What I want to talk about is my struggle that has been become more prevalent the last few months.  I've seen people post on our support groups about it a lot.  Its something that people without MdDS feel.  Its something that I've dealt with in the past.  Its something that I know a lot of people who have suffered from it, but its also something that people are ashamed to talk about.  You feel less, you feel alone, you feel out of place.  Its depression.  Its anxiety.  Its panic attacks.  Its insane (but not really).

So I've been dealing with this for a long time behind my own walls.  I've been struggling to be happy and okay with the way things are, but I eventually cracked a few months back.  Depression for me is a very scary problem.  It was scary when I dealt with it back in high school and college.  Its even more so now.  Its a struggle to get up and out of bed on some days.  And for a very short period of time I didn't.  I stayed in bed, not moving.  I was beginning to give up on everything.  I was breaking the hearts of people closest to me because of it.  I was hurting them all while continually hurting myself. You can't just snap yourself out of it even though you want to.  You push everyone away, when what you need to do is pull them closer.  When I hurt like this, I end up saying and doing things that not only hurt myself but those around me. 

The day my world cracked....
I was home being mom & wife.  Dealing with kids & house & husband and I snapped on one of the kids for no reason.  I don't even remember what it was about, maybe not picking something up in the living room, or cleaning up after breakfast.  The point was it was nothing that warranted me yelling the way that I did to them.  The words that flew from my mouth were not me.  When my husband asked, "What is wrong with you?" I lost it.  I screamed and yelled and finally broke down crying constantly repeating "I don't know." as I collapsed to the floor there in the middle of my kitchen.  I just cracked.  I cried uncontrollably.  Something was wrong but I couldn't verbalize it.  I couldn't explain the feelings I was having, but they were scary.  

The next day I remembered trying and forcing myself out of bed.  I went to lunch like I usually do with my mom & grandfather.  But the minute I got home I went to bed and never got out.  I stayed there all day and slept most of the day away.  When I was awake, I cried.  At this point it wasn't the harsh sobbing, but a constant roll of tears down my face.  

The day my world exploded.....
I tried to go to work.  I made myself get up.  I forced myself into the shower and then to get dressed.  I barely pushed my kids out the door to get them to the babysitter.  I don't really remember even dropping them off that morning.  I do remember starting to head to work and getting on the interstate.  I was coming close to the exit to change from one interstate to the other when all of a sudden I couldn't breathe.  My hands started shaking and my vision was tunneling.  I pulled over and knew that I was going into full blown panic attack.  I knew I had to calm down.  I had to get off the interstate and I needed help fast.  I took deep breaths, slammed my music on really loud and started breathing to the rhythm of the songs that played.  I calmed enough to get on the phone for help.  I immediately got on the phone with a psychiatrist's office and set an appointment up for about an hour after all this started.  I called my husband to tell him what happened and then work to let them know what was going on.  

I went to the counselor.  I was with her for over an hour & a half.  When I was done I called my husband again and he met me at home.  I stayed there for the rest of the day not leaving my room. 

My world gets a bandaid....
Over the next several weeks I have gone to see my counselor.  I start my week off in her office every Monday morning like clock work.  I'm working through a lot of the issues that I have in my mindset.  I understanding why I feel certain things and how to change those thoughts into something better.  I'm communicating more with those around me.  My husband, kids, family.  My friends.  My co-workers & bosses.  I can't take meds for depression or anxiety as they alter my personality too much, so I work on certain areas of thought and ideas of coping to make things better. 
 
I'm learning that the anger, frustration, anguish, sadness, lonliness, sense of loss, all comes with losing a part of who you once were.  Its all part of the grief of losing.  And its okay to feel those.  I don't have to hid it, or pretend like its okay.  I'm trying to be more open about it and not ashamed.  I'm trying to vocalize my thoughts so they don't build up and explode.   

Its taken me a while to brave writing about it and putting those feelings out there.  But I know others are going through similar feelings.  Even if its not with MdDS but other parts of life.  It is an everyday struggle.  You have to the good and the better days but you still have those harder, sadder days.  It doesn't just disappear and go away.  I have to work at it and that is okay.  And if this blog helps even just one person, then I've done what I've set out to do.  

So the song choice...I came across this song just shortly after my world explosion.  I came on one of my playlists through Spotify and I've heard it a few times since then and it's helped me feel a little stronger each time I hear it.  Dealing with depression & anxiety you feel like you are drowning in your own world.  But I'm working on getting my head more & more above water, through my faith, my family, & my friends.  I'm taking each day as it comes.  I'm working on myself each day.  And one day, I'm going to be better, I'm going to be myself, I'm going to be stronger.  
 

 

"Photograph"~Ed Sheeran

Figured I needed to write and catch up with the world. 
So to say I've been busy is an understatement.  As you know, I've been working full time, but did you know I have two side jobs that I do?  I also type press releases for a friend's company and edit books for some author friends.  I love the writing & editing aspects because I love the written word (obviously...um hello there blog).  I've also been studying for a Medical Billing Certification that I've had trouble passing due to anxiety issues.  I've gotten better at working through those, but it is still a very difficult for me during certain events.  I'm also getting ready for a new Girl Scout season to start.  I'm a leader of a multi-level troop which means my girls range in age from 1st grade to 5th grade.  So lots of projects there.  Then there is me being a mom of a 10 & 7 year old who are getting ready to start their school years in two weeks.  Oh and let me not forget that we are taking a family vacation for 5 days to Tennessee, so there is planning for that.  There is also the anxiety of another mountain trip, but I really want to make this trip.  I am so very excited about it and can't wait to spend the time with my family.

So again, I've been busy is an understatement.  But through all of the craziness, I've been feeling pretty good.  I've had some small episodes, especially when some major storms came through the area, but other than that I've been really good.  I've been making sure to get plenty of rest.  I'm not stressing over the small stuff as much as I usually do.  I've taken time for myself by reading as much as I can to have quiet time.  I also have been listening to more music which has helped me stay relaxed.  

Its definitely tough to find things to help you cope with everyday life when you have MdDS, but you find what works for you.  Part of feeling better is trying to stay calm through the storms.  Finding ways to relax that don't trigger symptoms.  My favorite place to go shockingly is either the beach or pool.  Why not rock in a place where you are actually supposed to rock?  I actually love walking in sand.  I move the way my brain wants me to, and if I fall, it doesn't hurt.  The water is a place to just be able to just be.  I don't get in the pool when there are a lot of people.  I usually do this when its just my husband and myself so that I don't have the extra movement from the kids splashing.  The ocean water is a little different.  I don't go out in rougher seas, but when its really calm small waves.  It actually helps my body relax a lot.  Plus sitting in the sun and just getting that added Vitamin D definitely makes me feel much better.
I also read.  I do this by using an e-reader.  I adjust the line spacing, font size and style and the brightness.  I also read short stories on my harder days.  This makes me feel like I've accomplished something.  If I'm feeling really good I'll read the longer novels since I'm able to concentrate longer. 
I listen to music as well.  I alternate between either my headphones that cover my ears completely.  These noise cancelling headphones help block out the rest of the world as I relax.  I also use an ear bud that fits inside my ear canal.  These softer buds help when I'm dealing with ear pressure.  I know it sounds weird.  For most people these types of earbuds bother most people with ear conditions, but for me they actually have the opposite affect.  They help balance the pressure feeling in my ear.  I typically use these more in public as I can hide the cords under my shirts.  They don't get in the way of what I'm doing.  Also I'm able to just use one if I need to be able to hear my surrounds and the people around me.  The music helps me stay focused in chaotic situations while still being somewhat involved in the situations around me.  

Through the craziness of life I have found what works for me. I hope that other MdDSers have found what works for them.
~Sara
 

"Fear"~Blue October

OK, so this song has been stuck in my head for two days and the more I listen to it, I had to write about it.  

So first let me just talk about the video (which may be hard for MdDSers to watch)  But the fact that he is singing these words out into a really rocky ocean spoke even more volumes to me.  The lyrics talk about falling emotionally and mentally, however for us MdDSers getting back up from a literal fall is just has hard to to.  To scream these lyrics out into the world the way that Justin's voice carries is amazing.  

Alright, so the lyrics.  He basically is singing about pushing through and getting back up and moving on.  You don't have to fear anything.  You can push through and be okay on the other side.  There is light on the other side even when you feel like you are in a dark place.  Its about believing in yourself when you didn't think that you could.

"Been running from a pain in me, A feeling I don't understand, Holding me down"

To be told there is no cure, there is no treatment to make your life go back to "normal" and that you will have to adjust to your new "normal" is some of the worst words you can be told.  This goes for more than just MdDS but any chronic disorder, disease, permanent injury.  To be told that your entire life is going to change is so devastating.  Its hard not to fall into a pit of despair and not be able to rise above it all.  

"The beauty is, I'm learning how to face my beast, Starting now to find some peace, Set myself free"

To find that peace with the "new" you is so difficult to do, but you get to a point (time line may vary for each person, mine was a few months) that you realize okay, I cannot let my life pass me by.  I have to do something to "fix" my world.  So I sat with my husband and figured out all of the parts of my life I do have control over and how can I take those parts of my life back.  There are still some things that I cannot do, and that is okay (can't look straight up to the sky, can't watch the trees go by in a car, definitely can't watch NASCAR or any other fast movement).  But I can crawl up the stairs to tuck my kids into bed on my medium symptom days, I can work even on my 7-8 scale days with the help of my co-workers.  I can dance on my low symptoms days (and I be sure to do this even if I'm not in a dance move because I have to prove to myself that everything is going to be okay).  I push myself to travel, go on trips, see the world.  

"I'm staring through the I don't care, It's staring back at me"

I have had to learn to take chances.  Even if it will restart my symptoms, I can't live in the fear that my symptoms and life will go back to the way it was three years ago.  I have to live every minute of my life that I have even on high level symptom days.  I have to be able to look back and say it was totally worth it and I'm ready to do it all again.  

"I don't have to be afraid, I don't have to let the damage, consume me,"

In two weeks I'm heading to Tennessee.  Its the first time I'm traveling through mountains since I was diagnosed.  Its the first time that I will be dealing with extreme heights above sea level while going back and forth and around various mountains, but I have to do this.  I want to live my life with my husband and kids.  I want to take trips with them.  Our plan is go to a theme park, an aquarium, and maybe even horse back riding.  All types of triggers, but I have no fear.  I have to trust in myself.  

"Fear in itself
Will reel you in
And spit you out over and over again
Believe in yourself
and you will walk
Fear in itself
Will use you up and break you down
like you were never enough
I used to fall but now I get back up

I'm moving on
Oh god just move on
Today,
I don't have to fall apart
I don't have to be afraid....
Get back up
Get up"

"Fight Song"~Rachel Platten

I want to start with a little explanation since I've gotten asked a few times about this.  The question is "Why song titles?" and also "How do you chose your titles?"  The answers are pretty simple.  

If you go back to some of my original posts I explained how music has always been a huge part of my life.  It has had a major impact on my life including my healing with MdDS.  I listed to music a lot in the beginning of my diagnosis because I couldn't watch TV or Movies because the motion of the screens would worsen my symptoms.  I couldn't read because the words would move around too much and cause major headaches, so all I could do was lay in bed and listen to music.  As I started moving around a going in public I found that having music playing in my ears helped me concentrate on myself instead of the world around me.  I was able to focus better on my tasks at hand instead of what the was going on all around me.  It helped me learn how to walk without looking drunk.  Finding a focal point in front of me and using the beat of the music for placement of my feet made walking so much easier.  I still use this tactic on my lower symptom days.   

I pick song titles for their lyrics or how the song makes me feel at the time.  The lyrics could not pertain to me at the time but the score motivate me to move of feel a certain way. Sometimes lyrics speak to that part of my life.  What I'm trying to accomplish, what I'm feeling, who is around me.  I chose them based on what I want to talk about or how I'm feeling that day.  So I'm going to start explaining the song choices because I typically don't explain why they are the titles of the post and who knows, it may inspire someone else.

So my post today:

I got through a whole week of work after being stuck at home for two weeks down & out.  I pushed this week to do what needed to get done.  I was able to work everyday for full days.  I came home and was able to edit a few books this week and get a couple of press releases typed up.  I worked hard this week and I'm so proud of myself.  

I finished this week by walking around Mt. Trashmore with one of my co-workers.  It was such a gorgeous evening to get out and get moving.  Last week this time I was barely moving around my room and now I'm walking around a for a hour after working an 8 hour day.  

I feel amazing.  I feel strong.  I feel proud.  

I also have been searching for new music to listen to and have come across some amazing songs and artists.  It's inspiring to me.  It makes me want to move around more and write more.  

I am hoping that this is a start of me getting back in the habit of writing again.  I have really missed it.  I forgot how much getting the good & bad out in my own words makes me feel so much better.  It's a part of who I am.  

So my song choice for today is "Fight Song" and it is about not giving up.  No matter what is going on in your life or if anyone else doubts you, you keep fighting for yourself.  You push through and become who you are supposed to be.  There is a lyric that says "This is my fight song, take back my life song, prove I'm all right song....'cause I've still got a lot of fight left in me."  I'm a fighter.  Even when I'm feeling at my lowest of lows, I still fight to do what I need to do.  I do my exercises no matter how many times I fall down.  I practice reading and writing even when the words move around.  I push to do even three stairs in my house, but I do it.  I'm not giving up.  I'm going to keep fighting.  
~Sara




 

"Cheerleader" Felix Jaehn Remix Radio Edit-OMI

Social media has become a day to day event for most of society these days.  There are so many avenues with Facebook, Twitter, Snapchats, Instagram, YouTube, YouNow, etc.  So many ways to meet new and interesting people.  So many different kinds of cultures, societies, lives.  

But how does this affect me and those with MdDS?  It's a huge part of us.  With a disorder so rare that it is barely recognized in the medical world, it helps to be able to easily reach over borders and seas to find others who suffer the same.  In just the last few words more and more people are finding our groups and realizing that they are not the only ones who have this frustrating disorder. 

It's a place for education.  A place to throw out ideas and suggestions for treatments.  Coping mechanisms and exercises to help pull through some of the worst moments of having MdDS.  We can discuss ideas to bring up to physicians and medical educators and even our government in recognizing this disorder. 

It's a place to promote.  A place to set up rallies, events, walks.  A place to bring out new research studies that are being performed.  Notify about petitions or letters to the government for recognition.  

It's a place for understanding.  I mean this in a sense of support groups not only being set up for those specific to the group, but also those who support the people who are part of the group.  Friends & family who join in the conversations to learn more help the group as well.  Although they are not suffering with MdDS, they can get a feel for what others who do are feeling.  They can also learn more about the disorder.  

It's a place for friendships.  Like I said early, to be able to log onto anyone of the aforementioned websites and connect around the world with others who are literally on the same boat as myself makes me feel not so alone.  These women & men who are fighting the same battle as myself takes the isolation of this disorder away.  They help you not feel so crazy when you are having a bad day with your symptoms.  

It's a place for support.  Ok, well yea, they aren't called support groups for nothing.  But seriously....those days where you are at your lowest of lows, to be able to get onto the group and post a long rant of frustration without any judgement, just to get those feelings out into the open and out of your own head.  Then you receive multiple messages back stating, "We will get through this,"  "We are here for you."  "We will fight and pull through."  We, We, We, never you.  Never just you.  Because 'We' are in this together.  The best part is your support group is available 24/7.  No matter when you need them, there is always someone available to talk with. 

So if you are part of a group already or thinking to join, what is my advice?  Be active.  Introduce yourself to your group by including information about yourself (if you feel comfortable).  You don't have to do this as soon as you join, but try to do it within the first week.  Respond to posts that you feel you can relate to or have advise for.  Post your own situations.  It's kind of like being in class, no question is a stupid question, no feeling is a stupid feeling.  More than likely, someone else is going through the same thing or they have gone through it.  Don't just post about bad, post good too.  For some, seeing that others had a good moment in a typically bad situation helps a person to see their own light at the end of a dark tunnel.  The point is to connect to people.  Be a part of a bigger world. 

~Sara 

 

"Nuvole Bianche"~Ludovico Einaudi

I need to write.  I need to write it all out.  Its been too long.  So here goes....
Last Sunday we had a massive thunderstorm come through our area.  This is after the week before being off & on stormy weather.  The one on Sunday, however, threw me over the edge.  I have been in bed since then.  I've done everything I can to be able to move and function with no luck of getting back to my normal.  I tried going to work on Wednesday and lasted about 3 1/2 hours before having to leave.  I wasn't able to focus.  I could barely walk without the help of leaning on the walls.  
I got home Wednesday and I had a massive pity party.  Well not massive but I wanted to yell at someone. I needed to cry at someone. Well not at them specifically, I just needed to get it all out of me.  The frustrations & anxiety & stress that comes with this sometimes debilitating disorder.   I needed to cry.  So I did.  To my amazing husband.  And even though he was stuck at work and couldn't be physically there for me in that moment.  He just let me go.  He let me cry it out.  I needed to yell.  So I did.  Well, via messages to friends & family that were available to chat.  Even after hitting send, I felt so much better.  So of course my long message followed up with an "I'm sorry about that. I needed to AHHH for a moment.  You can ignore that.  LOL"  But they didn't.  They continued to listen, continued to ask questions and they were just patient with me as I processed everything that I was feeling.  
Saturday I tried to go to the store with my husband.  I felt like a drunk person falling all over the place....Yea, it was really bad.  I had severe anxiety thinking that I was going to just destroy the store if I fell over.  I couldn't walk straight at all.  I pushed the cart but it didn't seem to help.  I had to grab shelves at certain points, and also hold on to the husband as well.  
Sunday rolls around and I need to get out of my house.  I need to focus on something besides my bedroom walls, my disorder, my tablet.  I need a change of scenery.  I went to my Pop's house, the kiddos same with their cousins.  I bathed to the pooch with a lot of help from my sister & my mom.  I was up out of bed for about 4 hours or so.  By the time I got home I was really miserable.  I was holding back tears because I knew I had to call my boss and tell her that once again I was stuck, that I'm not better and I'm struggling.  Worst part of the day, but also the best because I have amazing co-workers & bosses that understand that this can happen.  They are not judgmental.  They care.  And that matters so much to me.  Words cannot describe how I feel with all of the support around me when I'm in this situation. 
So I've spoken about it before, how this disorder doesn't just make you off balanced but it causes a ton of mental issues.  I get really bad anxiety, I stress out, I go through a type of mild depression with it, and in some situations I may even have a panic attack or 5.  It can destroy you if you let it.  It is an awful feeling.  You worry so much about things that are unfortunately out of your control, but you can't help feeling this way.  
So then I worry what the people around me think.  I know I shouldn't but I do.  People are very judgmental and it can crush you.  Also, when you are in crowded spaces, it can cause anxiety for many reasons.  You don't know which path you are going to fall and God forbid someone jumps out & cuts you off.  Catastrophe waiting to happen.  Its a miserable feeling. 
For me, when the episodes are bad, I go back to setting minor goals to accomplish each day.  And I have tried that.  So far most of the goals haven't been successful, but some have.  Its hard not to feel like a failure when it doesn't go as I planned.  That's one of my biggest issues right now.  I KNOW I'm not a failure, but you can't help but feel that way.  So its more added stress on top of the crushing anxiety.  But I'm fighting through it.  Just like I've done each time in the past.  I keep setting up new goals.  And as long as I can accomplish at least one of those goals a day, I'll feel much better.  I'll be able to do much more each day until I'm once again back to my normal.  
But while being stuck in my bed, I started playing around on YouTube.  I have found all kinds of awesome videos; however, I found an amazing video which led to another video of his partner.  The videos explains the feelings that I have been having in other ways for people to understand.  The first video is of Mark E. Miller.  A YouTube vlogger who films his everyday life of himself, his partner Ethan, and their pup.  His video "The Feelies"  hit me pretty hard.  I caught this video at just the right time.  Then I kept searching and ended up finding that his partner, Ethan Hethcote, spoke from his own experience with anxiety in his video "Let's Talk".(See both videos below & the links to their YouTube sites).  Both videos express how people have these feelings of anxiety and how to deal with those feelings.
I agree with both guys in that this is something that you need to talk about when you feel this way.  Find someone who is supportive.  They may not completely understand exactly what you are going through, but in some way they have probably had their own experiences.  And even if they can't relate to what you are saying, they can at least be there to listen.  Don't bottle up the feelings.  Anxiety is a difficult subject for some to speak up about.  You feel lost inside of yourself.  You feel overwhelmed.  But, just like it is okay to laugh at life, it is also okay to cry, scream, get frustrated.  Its normal.  Its human.
So I know this blog was long winded, but its one that I've wanted to write since Wednesday.  Its something that I've needed to say.  I needed to talk about it.  
So thanks for reading.  Check out the guys' videos.  Good night!
~Sara

 MarkE Miller YouTube

Ethan Hethcote YouTube
The link that Ethan talks about:   http://bringchange2mind.org

"Waves"~Mr. Probz

I am one of those people who is okay with being able to talk about MdDS.  I don't do it for attention, but for awareness on a disorder that is so misunderstood that there are even doctors out there saying that it doesn't exist.  Its hard to be a person who looks well on the outside, but has all of this internal struggle going on on the inside.  
I push for awareness.  I speak up and try to explain it the best of my ability.  Even when I am symptom-free, I still speak up and talk about it.  
Unfortunately there are people out there who are unable to speak up like I can.  Because of their jobs, or worse, having no support and people not believing that this condition is even possible.  
Here are some problems we MdDSers have that I have found across the board:
1.  We can't just act "normal."  In fact, for most, this is our new normal.  
2.  We can't pretend it doesn't affect us.  Actually, trying to do this causes us more stress and then worsens symptoms.
3.  Its not "all in your head."  Well, technically it is, but not how you think.  This is an issue with the inner ear, vision and brain.  So yes, it is all in our heads, but we aren't making it up or acting just to get attention.
4.  Remission does exist.  Yes, there are a lucky few (I being one of them) that have had periods of remission, but for a lot of those people the symptoms do eventually return, sometimes worse than the original onset.
5.  I apologize in advance for forgetting you invited me to a party, or I forgot to pick up a certain item from the store, or I ask you to repeat something over to me because it takes me three or four times of you telling me the same thing to remember what you said.  Its called Brain Fog, and it really does exist.
6.  Don't mind me, I'm just having a panic attack in the middle of the mall with no escape because the crowds are moving too fast and the lights in the windows are blinking and I can't focus on what is happening around me.
7.  Yes, I've talked to a doctor.  No, they can't help.  The meds give symptoms I would much rather not deal with.  Rehab treatments can only go so far.  
8.  Yes, I'm frustrated.  Yes, I'm crying again.  Yes, I'm shocked as well that I don't have a bald spot from wanting to rip out my hair with this.
9.  No its not vertigo.   Vertigo is a broad term for motion disorders, however it includes spinning.  MdDS is a rocking motion, a distortion of vision in some cases, a constant feeling of motion sickness and much more.

Here's the thing, MdDS is a disorder that is so insane that the sufferers are doing more research than the medical field.  We talk with each other, post out possibilities and approach those few physicians who do believe us with ideas to try and see if they help.  We are finding connections with each other such as cardio issues, or migraine sufferers, from triggers to treatments.  We throw out what meds have helped and what hasn't.  The thing is, what helps out a few, doesn't for most. 

Its an every day struggle and even for those of us who have had the joy of remission, even if was for a few weeks or months, we continue to support each other because we never know when it will return, or if it will return.  

So what do I ask for?  
Understanding.  I've been fortunate enough to get that understanding from my family, my friends, my co-workers, my fellow MdDSers.  But I'm one of the lucky ones.  
Answers.  Why does this happen and how can we make it stop happening so no one else ever has to deal with this disorder.
Support.  So many people just need someone to say "I've got your back"  "You're not alone" "We are going to get through this"

I leave on this note.  MdDS is an internal struggle for every sufferer.  Its not just about the adjusting, its about coping and fighting yourself internally to figure out what the hell is going on with your own body.  Its a matter of having been an independent person to relying on those around you even for the most mundane tasks.  To fight your pride and ask for even the slightest bit of help.  An internal struggle to be okay with cards you were dealt with so that you can fight to live each day as best you can.  

~Sara